March 2020

2 minute read time.

Second round of chemotherapy and up to the 100% dose of 400mg temozolomide alongside the 3rd round of immunotherapy at the start of the month. Bloods came back all good and rash and itching have cleared up so treatment went ahead as planned. Annoyingly the cannula caused issues on this round of immunotherapy, first one went in and couldn’t get any blood and the 2nd one had to be wriggled in. On top of that when it was taken out the blood swelled up under the skin to the size of a golf ball! Luckily some pressure and ice managed to get it under control and now just have some really heavy bruising.

Coping ok with the full 400mg dose of Temozolomide, the 100mg tablets (even though have to take 4 of them) seem better than the 140mg tablets which I had before as they tasted like bleach! Some slight nausea in the night but no sickness and able to eat breakfast ok in the morning. I would recommend just taking the anti-sickness tablets regardless of symptoms, better to prevent it rather than try and cure it after it kicks in!

Seeing more of the local palliative care team now, who have been a bit hit and miss so far. On top of that having weekly counselling which is helping me to open up a bit more and get some stuff off of my chest. I get very worried about upsetting those close to me so having a neutral person to talk to has helped me to offload some my worries on.

Have noticed that I’ve put on over a stone since Christmas, not being as active everyday being up out and about has really slowed my metabolism. Started checking my calorie intake using “MyFitnessPal” app (which allows you to just scan in bar codes and makes it really easy to track intake) to ensure I'm not overloading on my daily calories. Basically aiming to maintain my current weight but realised I've been eating well over 3,000 calories a day!

Despite the good scan result, started suffering with some slight niggles with motor control in the arm and leg. Started missing the steps when going up the stairs and hand has started shaking when doing fine motor control like taking a tea bag out of a cup of tea and balancing it on the spoon. Now having further sessions with a physiotherapist to improve muscle strength and co-ordination.

4th round of immunotherapy put back at week into April due to Coronavirus so that the appointment ties in with my next round of Chemotherapy. Having us all stuck in at home is a blessing and also a nightmare rolled into one! I now have the chance to spend every day with my children but also they are rather demanding and seriously draining, especially when going through/recovering from treatment!

Anonymous